450 FSHD patients join Long-Term study to unlock better treatments
NCT ID NCT04635891
First seen May 23, 2026 · Last updated May 23, 2026
Summary
This study follows 450 people with FSHD for at least 3 years to track how the disease affects walking, arm use, breathing, and other daily activities. By collecting detailed measurements, researchers hope to improve patient care and help design better clinical trials for future treatments. Participants do not receive any experimental drug or therapy.
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This is a summary of
the original study
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Locations
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Austin Neuromuscular Center
RECRUITINGAustin, Texas, 78759, United States
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David Geffen School of Medicine at UCLA
RECRUITINGLos Angeles, California, 90095, United States
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Duke University - Lenox Baker Children's Hospital
RECRUITINGDurham, North Carolina, 27705, United States
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Kennedy Krieger Institute
RECRUITINGBaltimore, Maryland, 21205, United States
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Neuromuscular Disorders Program at Stanford University School of Medicine
RECRUITINGStanford, California, 94306, United States
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Ottawa Hospital Research Institute
RECRUITINGOttawa, Ontario, K1y 4e9, Canada
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Sheffield Teaching Hospital
RECRUITINGSheffield, South Yorkshire, S10 2JF, United Kingdom
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The Ohio State University Medical Center
RECRUITINGColumbus, Ohio, 43221, United States
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Univeristy of Florida Gainesville
RECRUITINGGainesville, Florida, 32608, United States
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Univeristy of Kansas Medical Center
RECRUITINGKansas City, Kansas, 66160, United States
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Univeristy of Texas Southwestern Medical Center
RECRUITINGDallas, Texas, 75390, United States
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University of Calgary
NOT_YET_RECRUITINGCalgary, Alberta, T2N1N4, Canada
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University of Colorado Anschutz Medical Campus
RECRUITINGAurora, Colorado, 80045, United States
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University of Iowa
RECRUITINGIowa City, Iowa, 52242, United States
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University of McGill
NOT_YET_RECRUITINGMontreal, Quebec, H3A 2B4, Canada
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University of Rochester Medical Center
RECRUITINGRochester, New York, 14642, United States
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University of Sao Paulo
RECRUITINGSão Paulo, Brazil
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University of Texas Health San Antonio
NOT_YET_RECRUITINGSan Antonio, Texas, 78229, United States
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University of Utah
RECRUITINGSalt Lake City, Utah, 84132, United States
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University of Washington Medical Center
RECRUITINGSeattle, Washington, 98195, United States
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Virginia Commonwealth University
RECRUITINGRichmond, Virginia, 23219, United States
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Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.